47 replies to this topic

[jrsboo]

I know there are a couple of you out there.  I just had my onc visit today and I am once again PRCU, which makes it about a year now.  I was only diagnosed a year and 3 months ago, so clearly the Sprycel is working fantastically for me.  But Onc and I were discussing lowering the dosage, when it would be acceptable, etc. 

Her initial take (and she IS a CML specialist) is that it is too soon.  That in the previous studies with Gleevec, those that did the best with lowering or stopping the drug were those that were PCRU for 5 years or more.  Since Sprycel is so new, and there are not that many of us on it (statistically), she is unaware of any studies to lower the dosage of it and test for relapses. 

But I remember that a few of you that go to Dr. Mauro or Dr. Cortez are on less.  Was that because of the difficulty of tolerance to the drug, or because they wanted to see if you did ok on less.....?  My Onc is wonderful and asked me to ask around and then send her what I found out.

Thanks!

Caroline

[Judy2]

Hi Caroline,

I am so happy for you regarding your great results on Sprycel.

I just started on 50mg Sprycel about 3½ weeks ago. The reason I started at a low dose was because of side effects. I had numerous side effects on Tasigna and Gleevec. I also have kidney problems. When I first started on Sprycel my onc did say we might have to raise the dose. I have the feeling that I will end up having to take a higher dose but I am hoping this is not the case. I have idiopathic urticaria and angioedema so this makes the TKIs a little harder for me to take. I  know this is very different from your case but if I have good results on 50 mg I will keep the group informed.

Caroline, have you had any skin issues with Sprycel? I saw my allergist today, he is the doctor who treats my angioedema and I have a terrible blister like rash. At first he thought it was folliculitis but then said it was herpes. I looked up Sprycel and it says it can cause both. I am now on an antiviral medicine so we will see if that helps.

I am hoping you are able to lower your dose at some point and maintain good results.

Judy

[jrsboo]

Yes, LOTS of skin issues.  I too all of a sudden had a herpetical outbreak (ended up in the urgent care, having NO idea what it was).   I took Valcyclovir for a year, but recently took myself off of it, if an outbreak occurs, I can just take 2 pills a day for 3 days and that will take care of the outbreak.  But I was trying to limit what I was taking as I had a very odd reaction to a Statin drug.

I also have some weird fungal infection that hits for no apparent reason every so often and where ever skin touches skin it just seems to dissolve into a putrid mess.  So I have Naftifine HCL 1% gel for that.  Clears it up immediately, but boy does that BURN.

I also have rash on face and neck.  More like a flushing, and it doesn't hurt, so I don't do anything about it.  If I get tired or over do, it feels like a sun burn. 

When I first started I also had weird polka dots which turned out to just be hair follicles that were pissed off that I was taking a TKI.  Nothing helped that either.  Just used lots of Colloidal Oatmeal lotion from Nature's Gate.

I also have the tip of my tongue which is about half the time red and raw.  I have magic mouthwash for that, but usually just man up and live with it as the mouthwash tastes worse than the cure.

Don't freak out, I have one of the most sensitive systems out there.  I am sure that you won't get half of that.

Sigh.

Hugs.

Caroline

[Trey]

If there is one TKI drug where the dosage could be lowered earlier, it would be Sprycel.  If you were on Gleevec, I would say it was too soon.  But Sprycel will likely turn out to be more forgiving as we learn more about dosage levels, so I would suggest that earlier reduction is likely OK.  But having said that, maybe a small interim drop to 80mg, then to lower in a year or so might be appropriate.  But this is uncharted territory, so there is some level of risk. 

[Judy2]

Hi Caroline,

Thank you, thank you, thank you for replying. I was just about in tears when I came home from the doctor. I cannot believe I have yet another side effect. I am now on Valtrex for the herpes (BTW, I have never seen such big pills in my life, if the CML doesn't get  me I may end up choking to death on one of these pills). After just 4 days on Sprycel I, too, got a rash on my face with many welts. I am now on 5mg Prednisone and that rash is gone. Now, if my left thigh would just clear up, it is a mess.

Thanks again, Caroline ,for all your advise, it has helped me tremendously. I will keep you posted on how I do on 50mg Sprycel. I should know more in about 3 months. I'm wishing you all the best.

Judy

[GerryL]

Hi Judy,

Just wondering whether a zinc supplement might help. I take Gleevec and noticed that I was getting some folliculitis, which I had rarely suffered from before, so started taking zinc. I haven't had any issues since I started taking it.

A number of web sites state zinc can help with herpes. I start to wonder is it another of the minerals in our body that the TKIs can effect.

Hope you feel better soon.

[scuba]

Hi Caroline,

I take only  20 mg. Sprycel. My PCR level plummeted from over 55% after struggling on Gleevec to less than 0.1% in 7 months. I just had another PCR taken a few days ago and will be eager to learn what my current PCR level has become - and I will report that here. If my PCR drops a log (i.e. from 0.1 to 0.01) or even becomes PCRu - then I will be very happy. My cytogenetics is clear (0 bcr-abl cells detected). There is also a chance there will be little change in my PCR level in which case I will ask Dr. Cortes to increase my dose to 40mg.

Dr. Cortes (my Oncologist at M.D. Anderson) believes that 100mg. Sprycel is way too much for CML treatment and only prescribes a maximum of 70mg. to new patients. He quickly drops the dosage when he sees side affects develop (mostly myelosuppression) in his patients to 40mg. He has many patients on 20mg. Sprycel doing very well (i.e. PCRu).

I have no side affects that I can feel.

It is believed that Sprycel affects the dividing CML cells higher up in the cell hierarchy more so than the other TKI's. Sprycel only lasts in the body for 5 hours and so is quite effective.

There are concerns about Sprycel, however. It is a relatively new drug and research is showing that it may affect other systems in the body negatively (such as Osteocytes: cause them to differentiate into fat). It is my personal belief that the smaller the dose the better so long as you are achieving results. Perhaps your doctor can call Dr. Cortes and ask about you lowering your dose to 40mg. or even less and monitor your PCR level.

One final note: There is interest at M.D. Anderson in my use of Curcumin along with Sprycel. I take the equivalent of 8 grams of Curcumin per day. There is evidence that Curcumin + Sprycel may be synergistic. So my low 20mg. dose may be assisted by the addition of Curcumin. We just don't know yet. But I do intend to stop Sprycel altogether assuming I reach PCRu and will stay on Curcumin in the belief that Curcumin alone can keep me PCRu (maintenance).

[Judy2]

Hi GerryL,

Thank you for your input. How much zinc do you take? I know nothing about zinc, not sure what to get. I just made an appointment to see my dermatologist next week as the only way to be sure if it's herpes or folliculitis is to do a culture. Can I ask you, what exactly did your folliculitis look like? Mine is all on the left side, except for one sore that is on the right side so that makes me think it might be herpes but I guess the two can look similar. If I am getting a bad reaction to Sprycel I'm afraid I may not be able to take it but that would be a huge problem as I have already been through Gleevec and Tasigna. I think Bosutinib is scheduled to come out this year and that it is supposed to have less dermatologic side effects. I am really getting tired of this whole mess, I am running around to so many doctors, I'm geting to the point that I don't even know who to call for what anymore. I should see my dermatologist for this rash but should I also see my onc for it? My next appointment with him isn't for 1½ weeks. I also see my nephrologist and urologist next week. I just want to cry .Also, I started Valtrex last night and now I am feeling queasy. Too many pills for one person. I have this feeling that I  may have both folliculitis and herpes so that would mean I would also need an antibiotic as well as an antiviral. IF I EVER  AGAIN HEAR ANYONE SAY-CML, IF YOU HAVE TO GET A CANCER THAT IS A GOOD KIND TO GET, YOU JUST HAVE TO TAKE A PILL FOR THAT I THINK I WILL SCREAM!!! Anyway, thanks for letting me vent, it is only 10:00 AM and already this is not a good day.

Judy

[CathyS]

What dose of Curcumin are you taking.

I was diagonised Aug 2011 and I take 100mg Sprycel, a friend of my said I sould look into another form of treatment ie. herbal or holistic I'm not sure about any of that so far I am just doing what the onc tells me.

[scuba]

Cathy - I take 4-5 Physician Naturals 1,000mg C3 Curcumin with Piperine every day split in half (morning & evening).

My CBC is "suppressed"  but remarkably stable at just below the normal range. It is my so-called "new normal".

Dr. Cortes is tracking my Curcumin usage closely and is looking to get a trial funded.

[Cathy]

I am also on a reduced dose of Sprycel. I take 50 mg now for a couple months due to mylosurpression. My blood took a dive and would not come up after a 1 1/2 months so we reduced it and it is going very well. I am almost PCRU which G or Tasigna neither one worked this fast. My blood is low but holding so I'm very pleased with it. side effects are less now also. The fatique is still an issue with me and achy comes and goes and cramps in legs and feet. But nothing that bad I don't have skin issues yet! I probably shouldn't say that I'll get them now! I've been on 50 mg for about 4 months I think now. I get to go to onc only every 2 months finally. I'm hoping to be able to wait 3 months next time. I've had so many issues I have had to go to the onc so often for almost 2 years now I'm just excited to be able to go less often and things are finally going very well. I think next apt in March I'll be PCRU ! Optimistic!

I'm a big believer that the lower dose of Sprycel and it certainly is my favorite drug so far! LOL

Cathy

[scuba]

Cathy - very interesting. Dr. Cortes dropped me from 70mg to 20mg. in one shot. I have been on 20mg now for nine months and I can't wait to see the results of my just taken PCR test. I don't expect PCRu, however - but would love to be surprised.

It is interesting that 20mg of Sprycel costs the same as 100mg Sprycel ! Apparently price is not dose dependent.

[Cathy]

scuba,

Yes I know your on 20mg and maybe I'll get there soon who knows. I'm happier on 50 mg for sure! and it is interesting it is not cheaper! But I like it such small pills to swallow Tasigna was big pills. I'm hoping for PCRU! Maybe too optimistic but that is okay either way since I'm doing well finally.

cathy

[jrsboo]

Scuba, thank you so much, I knew you were out there, but couldn't remember your name!  I mean, I remembered your fact pattern, but not your name.  I am going to send this entire post to my onc!  Thank you so much!

Caroline

[GerryL]

Hi Judy,

You're definitely going through the wars.

I would try a zinc supplement that was 20mg or less and if that helped, stop taking the zinc and start taking a multivitamin which will contain zinc at low dosage as zinc does have side effects if taking too much or for a long period of time. In Australia we can get supplements in supermarkets, chemists or health food stores.

Folliculitiis for me are where the hair follicules get infected and come up like a blind pimple. I get them mainly on the torso. I did get it quite badly prior to being diagnosed and antibiotics cleared it up.

I'm booked in to have a colposcopy next month, after getting another low grade abnormal pap smear, I feel it is the TKI doing things to my skin cells.

Hope your day improves/improved.

Gerry

[Judy2]

Hi GerryL,

Thanks for responding, Now you are getting abnormal pap smears? Does it ever end? I had so much burning last night on my left thigh it was almost intolerable. I do have a feeling Sprycel is causing this and if that is the case I'm not sure what I will do as I have been through Gleevec and Tasigna already. If this is herpes, as my allergist said, then I have to be careful it doesn't disseminate through my body. My step-brother is a dermatologist and he told me to be aware of that. When I see my dermatologist I will ask him about the zinc. I'm also wondering if there is something I can put directly on the sores. Thank goodness this isn't the summer and bathing suit weather or I'd really be depressed. Although, come to think of it, you live in Australia, right? Isn't this the summer for you? I have always wanted to go to Australia. Have you ever traveled to New Zealand? It seems so beautiful over there. Have you ever been to the U.S.? Thanks for responding, and if you ever have the time I'd love to hear a little about Australia, it would take my mind of my CML.

Judy

[GerryL]

Hi Judy,

I had my first trip overseas to San Francisco about four months after I was diagnosed. If you've ever been to San Francisco - you'll find it feels a lot like Australia. Today the sky is blue without any clouds and a humid day, though there is a breeze outside that is lovely as long as you are sitting in the shade. We are at the end of summer though the heat will continue till the end of February. I live in the south east of Queensland which is sub tropical, if you stay on the coast line and travel further north the humidity increases. The southern states and inland tend to have a drier heat. One of my favourite places to holiday in Australia in Melbourne - though they are known to have four seasons in one day, I usually get nice weather when I travel down there.I haven't travelled to New Zealand yet, hopefully will get across "the ditch" one day. I'd also like to go back to the States and see some more of your country particuarly the east coast, though not during your winter. But it would be nice to experience a white Christmas one day.

Are they able to reduce your dosage of Sprycel?  You can also tell if you are low in zinc if you have white spots on your finger nails.

[Judy2]

Hi GerryL,

Thank you for telling me about Australia. I'm sure I will never get there, I hate to fly, but  at least I can have a vicarious experience through you. Australia sound beautiful. I imagine you putting shrimp on the barbie. I live north of Boston and although we can have some very snowy winters this year, so far, (and I have my fingers crossed) we have hardly had any snow. I live in a small town on the ocean so it is really quite pretty but the ocean is never very warm here , I prefer swimming in the pool. If you ever get to the Boston area let me know, I can show you the sites. Boston is a small "big" city with many interesting things to see. For instance, there was the great molasses flood of 1919 when a molasses tank burst in the North End, flooded the streets and killed and injured many people. Can you imagine meeting your death "by molasses"?

As far as my fingernails go, I do not have white spots but I have noticed ridges. I  just started on 50mg Sprycel 3½ weeks ago and if anything I think my onc was thinking at some time I may have to increase the dose. Now with the herpes I'm not sure what he will do. I see him in 1½ weeks and I will know more then.

Thanks for telling me a little bit about Australia, I am jealous.

Judy

[GerryL]

Hi Judy,

Here's a link to our floods last year, nowhere near as interesting as a molasses flood. Sadly we did lose a number of people in a small town during a flash flood - which was part of the deluge which flooded Brisbane. I'm on the coastline (without the views of the water), I wasn't affected by the flood. If you use your mouse to drag the black line across the photos, it will give you a before and after view. http://www.abc.net.a...als/qld-floods/ . Another slide show to keep you occupied - how things look after a year http://www.courierma...ves/floodcrisis

I just noticed I have a few more vertical ridges in my nails - vertical ridges are apparently harmless, just a sign of age. LOL Reminded me of when I went to see one of my GPs about the sciatica and muscle pain I was experiencing in my right leg in December. I mentioned to him that the Gleevec slowed down injury recovery. He didn't agree and said I was just getting old. Now I know I'm in my mid 40s, but didn't think I had aged that quickly since the last time my back was playing up. I'm now getting an acupuncture and it is slowly getting better.

Keep us up to date with how it goes with your dermatologist.